DESCRIPTION
Annamarya Scaccia of Austin, Texas decided she wanted to optimize her health by improving her diet and becoming a competitive bodybuilder. So, when she began to experience persistent back pain, she thought the pain might have been tied to her weightlifting. She also thought it might have something to do with her having polycystic ovary syndrome. Annamarya attributes her diagnosis of kidney cancer to her having a conscientious doctor. She saw Annamarya’s creatinine levels, didn’t like how they looked, and asked that Annamarya undergo an ultrasound. This led to an MRI, which led to the diagnosis. Annamarya said without these procedures, she never would have known she had chromophobe renal cell carcinoma.
Annamarya admits the diagnosis did not come as a shock. It came after a blood draw with bad indicators. After the blood work, her protein level was checked. Her weightlifting routine was reviewed because muscular people produce a higher level of creatinine. That led to another blood draw. The levels were still abnormally high, which brought on the ultrasound, which revealed a mass on her left kidney. Unfortunately for Annamarya, this made sense. She said for years her white blood cell count was high. When she brought to the attention to doctors over the years, she said they attempted to explain it away by saying it was no big deal, that she must have been sick at the time of the test. However, the doctor at the time of the diagnosis thought it might be something else and did some investigating the others didn’t. So, when Annamarya was diagnosed, there was neither shock nor disbelief, just pain and sadness.
When asked if she had treatment options, Annamarya said because renal cell carcinoma, especially chromophobe renal cell carcinoma, is a non-clear cell carcinoma, the only option is surgery. Her urologist had mixed feelings about the outcome. He was positive the surgery could cure Annamarya. He was hoping to perform a partial nephectomy, which was essentially carving out the tumor while saving most of the kidney. However, when he went and saw where the tumor was positioned, Annamarya knew right away that the entire kidney would have to come out. However, in regard to remission and the rate of recurrence, he was optimistic about things going well and about removal of the kidney being a curative approach.
The surgery, which included five incisions ranging from her ribcage to her pelvic region, went well, and Annamarya now needed to go forth with one kidney. First off, she needed to prepare for a change in her nutrition and a careful monitoring of her kidney function. Going forward, she had to have less protein, less salt and be careful about her potassium intake. Other than that, Annamarya says there is nothing one can tell you to fully prepare you for life with one kidney.
Annamarya Scaccia said the first three months of her recovery were extremely difficult. While some people have a kidney removed on a Monday and back at work on Tuesday, Annamarya it took her longer to physically return to normal. In addition, she had to tell her six-year-son old that she could not lift him up and that she couldn’t eat the foods he was eating. She wanted to expand her family, but gynecologist said that with her being 39 years old at the time and only having only one kidney that it would be just too high-risk for her to carry a child.
Annamarya says as tough as the physical component of her treatment and life post-treatment can be tough, the emotional piece is much tougher. By way of advice, he says it is okay to feel however you may emotionally feel, you shouldn’t suppress those feelings and that you do not have to make other people feel better.
Additional Resources:
The Kidney Cancer Association: https://www.kidneycancer.org
TRANSCRIPT
Bruce Morton: Greetings and welcome. This is the Cancer Interviews podcast. Thanks for taking the time to be with us. I’m your host, Bruce Morton. A renal cancer journey is extremely challenging, and our guest on this episode dealt with uncertainty, physical scars, emotional scars and more uncertainty, but she has survived, and she is here to share her story. She is Annamarya Scaccia of Austin, Texas, and Annamarya, welcome to Cancer Interviews.
Annamarya Scaccia: Thank you so much for having me. So excited to chat with you.
BM: All the people on our podcasts are different, but our interviews begin from the same place, as we want to know more about you and your life outside of your cancer journey. So, if you would, tell us about where you are from, what you do for a living and what you do for fun.
AS: Sure. So, I am originally from South Brooklyn in Brooklyn, New York. I like to say South Brooklyn because it is a very special vibe. For work, I am a communications professional, but I am a journalist by trade. So, before moving into the public space, I worked as a social justice journalist regarding domestic violence, mental health and topics around that area, LGTBQ issues as my areas of expertise.
BM: Also, when you are not working, what do you like to do for fun?
AS: I am also a competitive bodybuilder, so I like to lift heavy weights for fun. I am also a photographer, a painter and do a lot of creative writing.
BM: Let’s talk about your health prior to your cancer diagnosis. What was your health like at that time?
AS: It was really good. So, a couple years before my diagnosis, I had decided to go on a new fitness journey. I had always been into sports, had always been into going to the gym and being healthy. I had really focused on getting my nutrition right, getting my exercising right because I knew I needed a change at that point. I was very much in excellent health before I received my diagnosis.
BM: And when did you notice something wasn’t quite right?
AS: That’s the thing about kidney cancer. You don’t notice that something is not quite right. I did have persistent back pain for a while, but I attributed that to other conditions that I have. I also had polycystic ovary syndrome, or PCOS. Lower back pain is a symptom of that, so I just attributed whatever physical pain I had to that. The way I ended up finding out the kidney cancer is because I had a doctor who cared. She saw my creatinine levels and didn’t like how they looked, so she sent me for an ultrasound, which led to an MRI, which got me to the diagnosis, but there were no preceding symptoms that made me go check my kidneys.
BM: So, what began as lower back pain led to a diagnosis of chromophobe renal cell carcinoma. It cannot be good news for anybody to learn they have cancer, so there is no such thing as a good day for it, but for you, how much of a shock to the system was it?
AS: For me, it wasn’t a shock. The way the process had gone, I had just gone for a routine wellness check. She saw my blood draw, she didn’t like it. We did a couple of factors first before I went for the ultrasound. We tweaked my protein, we tweaked my exercise because one thing about creatinine is that people who are muscular, they produce more creatinine. Athletes have higher creatinine levels, what looks like a lower kidney function because of the way muscles play into that. So, we did that, then we did another blood draw. The levels were still high, that’s what led to the ultrasound, and that’s when I found out I had a mass on my left kidney, and so, between the ultrasound and the MRI was two weeks. I think people around me were more in shock and disbelief than I was, so the minute I heard there was a mass on my kidney, I just knew. I mean, in my gut, it made sense. For years, my white blood cell count would be high. I always thought to myself that that was weird. My other doctors would always explain it away, that I must have been sick at the time of the test, that’s why they were higher, but it was always persistent. I always asked questions about it. The current doctor I have, who is amazing, put all that together and just knew that it might be something else; but over those weeks, I already resigned myself to the fact that it was cancer. You just don’t hear that you have a mass on your kidney, I know the way cancer works, so, when I got the call, it wasn’t a shock and wasn’t disbelief, it was just pain and sadness.
BM: Now, Annamarya, you had gotten this news, so the next step is treatment. Did you have any options as to which way to go?
AS: No. That is something about renal cell carcinoma, particularly chromophobe renal cell carcinoma, which is a non-clear cell carcinoma. There are no options other than surgery. The tumor is resistant to chemotherapy, and so my only option was surgery. They had not done a biopsy beforehand because they were afraid one would spread the cancer cells, so it was surgery first, then I got the diagnosis, although my urologist was very certain it was cancer. There was no other option for me.
BM: Did your urologist have optimism with respect to the outcome for this procedure?
AS: Yes and no. He was positive that he could cure me. He was hoping to perform a partial nephrectomy, which is essentially just carving out the tumor and saving most of the kidney, but when he went in and saw where the tumor was positioned, I knew he would have to take the whole thing out. Overall, in regard to me going into remission and the rate of recurrence, he was optimistic about it being well, and about this being a curative approach.
BM: Did he discuss with you a possible worst-case scenario?
AS: He did, but didn’t go into so extensively because he took into account my age, my health at that time, and the cancer itself post-surgery, that he didn’t think a worst-case scenario was likely to happen, but he did discuss it with me. He explained that when the cancer recurred, it would not recur in the other kidney and that it would show up other places. He took me through all that, but he was very optimistic about my health. I am in remission, there is no evidence of disease, as of October 2021.
BM: Was there much discussion about what life would be like without one kidney?
AS: Yes. They did take me through some of that. I don’t think the doctor could really prepare me for other things, they prepared me for my nutrition changing, long term outlook, having to be really careful about my kidney function. Unless you live without a kidney, I don’t think you can really prepare someone for life with one kidney. You are going to have to have less protein, you are going to have to have less salt or you gotta watch out for your potassium. I don’t think they can really prepare you for all of that.
BM: So, you had a lot on your plate both physically and emotionally as you considered the present and the future. Were there any entities, any people that served as a source of support for you during that time?
AS: Absolutely. My partner, he had been by my side throughout the whole journey. My son is very young, he was five at the time, he had been a strong source of support, too, because I am his mama, and he wants to make sure I am safe. He would bring me food in bed and made sure I didn’t move when I wanted to move, and also the people I work out with who had been by my side through my fitness journey, they were also there for me. My support team wasn’t just a few people, I am connected with so many people who have been a source of support, and I have been a source of support for them, too.
BM: How about an organization? I had mentioned people and entities. The Kidney Cancer Association. To what degree has it been of assistance to you?
AS: I love the Kidney Cancer Association and continue to do work with them. They have provided a space for me to write my story out. I am a journalist by trade, I am communications professional, I truly believe words can change the world, I believe words can connect people and so it gave me a space to frame my story in a way that can also inform others, who are going through something similar or who may have ideas in their heads and don’t know where to go to, so, now we are partnering together and I am doing a bit more in terms of communications work, I am working on newsletters for them, finding different ways to spread the word more, connecting them with other survivors. I would also mention KC Cure, one of the first cancer organizations I dealt with after my surgery.
BM: Would you say, for the person who might have just been freshly diagnosed with kidney cancer or chromophobe renal cell carcinoma, would you say there is something to be said for aligning yourself with a support group?
AS: Yes. I think it is really important to have a support system that you can turn to. I guess it gets very hard when encounter people who don’t understand what you are going through. I mean, your friends and loved ones have a place, but at the same time, the way cancer can be, there is something to be said for turning to people who understand what you are going through. So, finding that circle of support of people in similar situations who have maybe gone through the same situation and may be on the other side of recovery or maybe they are going through it right now, and being the same age is important because being a young cancer survivor is a whole different experience.
BM: Let’s get back to your treatment. If you look back, what was the most difficult phase?
AS: The first three months of recovering were really, really hard. You hear from other people who perhaps have had a kidney taken out and said they were back at work the next day. For me, that just wasn’t the case. It took me longer to be able to work, and work out, to feel one hundred percent in my body, so I would say physically that was really, really hard in terms of my treatment. I think emotionally, other than having to deal with the stress of my cancer, it is tough telling my son I cannot eat the things that he eats or having to figure out where I can go eat or it being just a stressful experience just to get food in your mouth because something might have too much sodium or I might not be eating enough protein. I would that was also a byproduct of treatment that is really, really tough. Another thing that can be tough, but is something that happened after treatment is that I cannot carry a kid. There were plans to expand my family and when I brought it up to my gynecologist, she had looked at me and just said, given my being 39 years old, in the realm of gynecology, that is too old to have a child, with my lacking a kidney, it would just be too high-risk for me to carry a child. While I know families can be formed in many different ways, knowing that you won’t be able to have a family the way you want to, is again, a byproduct of the treatment following my surgery.
BM: Annamarya, we had talked about your friends, we had talked about the Kidney Cancer Association being sources of support when you are going through the recovery process that is more conventional in nature; but this is a very specialized area of difficulty, this news that you could not carry a child. Is there anyone who can be a source of support for this unique situation?
AS: I’ll be honest, I am not sure. I think other survivor friends can be diagnosed with your type of cancer or maybe experienced the same thing. I don’t know how to answer that because I haven’t found that source of support to really explain how I feel about it. You find those people who really want to be positive for you and say this is not the end, but they are not listening to how you feel, so I wish I could answer that with something positive.
BM: Could you say, and this is not a competition if you could quantify the scarring from this overall experience through a wide-angle lens, in a sense are the emotional scars from the cancer journey tougher than the physical scars?
AS: Absolutely. I think that one thing I have experienced, and my survivor friends have experienced is this idea that we are fine, or being told that we are fine, because we don’t bear the physical symptoms of cancer. None of us have lost our hair, none of us have had to go through years of chemo, but we are constantly told that we are fine because one can’t see the physical things that we go through. Sometimes I still feel pain at the incision site because of the scar tissue. That can be tough, but the emotional part is a lot tougher, and it becomes even tougher when you’re receiving this message of that we should be happy to be alive. I end up feeling this sort of survivor guilt, but it is difficult having just one kidney because if it goes down, then you are on dialysis and your life is shortened exponentially. Getting all these messages on the outside makes the journey a lot tougher, emotionally.
BM: We talked about emotional scars, Annamarya, but make no mistake, there are physical scars that come with your procedure. For podcast listeners, they cannot see this, so if you would, describe what the scars are like at the incision site.
AS: I had a robotic surgery, so, I have five incisions on my left side, one starting above my belly button, to my belly button, then a few in my pelvic region on my left side and then one or two underneath my rib. So, that’s how they went in. They have healed but they are still there and because of the procedure, I have a lot of extra skin in my abdomen because I had lost a lot of weight over the years and had that extra skin anyway, and so now it has king of collected like crushed velvet drapes in an art deco building, that’s kind of how the skin now hangs. So, if you are someone who has that extra skin, there’s a chance that is what your scars look like now, not just that one incision, but all that gathering in that one spot. I know people who have had open surgery and they have that one kind of swooping scar on whatever side they had the kidney removed. It stays and then takes a while to heal, stays red for a bit, probably a bit longer. For me, it stayed red for a few months, but it is now ‘skin toned.’
BM: Exclusive of the scarring, is there any residual pain, even now from the procedure?
AS: Sometimes I will just feel pain on my left side kind of right above my hip, I will some pain and tightness and tenseness because it cannot one hundred percent do what it used to do. It is not as flexible as it was. I still have to build up that strength, so when I bloat up, I can feel the difference in how I bloat from food or carbonated beverages, sparkling water or what not, the way I bloat up is different now and I kinda feel this hollowness in the side. In terms of the scars themselves, with just the middle one I can sometimes feel the pain probably because of scar tissue that hasn’t really broken up, so I have to do more of that work of massaging out to kind of break it apart, but I will even a year and a half later, will still feel in that area, right in the middle of my abdomen, I would say it is about three inches long, the scar there, that is the biggest one. I will still feel some pain.
BM: You had mentioned being a competitive bodybuilder. Can you still engage in that activity in a competitive way?
AS: Absolutely. I didn’t become a bodybuilder until after my diagnosis. Before that, I was a kick boxer. I love kick boxing. I have a tattoo on my left forearm of a woman holding boxing gloves, and so that was my heart, that’s what I was doing beforehand, but as I got back into it, I realized I couldn’t do it anymore. When I would spar with people, sparred with this one person and she went after my right side after I told her not to, and I realized in that moment, even in sparring, I can’t protect my right side, so I could never compete in kick boxing or anything like that. So, I always loved lifting weights, too, but it was always secondary for me because I have two herniated discs in my neck, so doing any above the shoulder movements were always so hard for me, so I used kick boxing to build up that strength in a different way. With that strength I started lifting more weights, and I just wanted to be on stage and produce, and I could shatter the status quo as a bodybuilder. I would love to have both my kidneys, don’t get me wrong, but you don’t have to have that, you have to have one gram of protein for one gram of body weight or even more than that to build a muscle.
BM: You had mentioned the word ‘inspiration’ in your last answer just now, and I want to bring up a subject that you have already addressed in part, that you have mentioned as a source of inspiration, and that’s your son. That’s about his bringing meals to you while you recovering, but what about his recovery? I am sure it has been a difficult time for him as you are recovering from your procedure, is he emotionally recovering?
AS: It was hard for him, really hard for him and I have written about it for the Kidney Cancer Association in that watching him deal with my recovery. I would say for the first year, he was so afraid of my dying. He is young, he’s six, so it doesn’t matter what I explain to him, he doesn’t understand. What he understands is, cancer is bad and his mom could have died. There was this one day I will never forget. When I was using the rest room and I could hear this almost blood-curdling scream of “Mom!” and I heard him scream it over and over. I kept telling him I was in the bathroom and he kept hearing him screaming because he was looking for me. Then when he saw me, it was okay, but it was all because I wasn’t in the room, and he was afraid, he was afraid of losing me. I think still to this day, he understands that mama’s okay, but there is still this part of him that is afraid of losing me. If I am not in the room, there are times in which he will ask, “Mama, where are you?”
BM: Is it fair to say that in some form or fashion, you lift him up and he lifts you up?
AS: Absolutely. He is my buddy, and I would agree that we do lift each other up. He makes me feel better in those moments where I feel like I failed him. He will always reassure me when I feel bad. He will get that anxiety when he thinks something bad has happened to me or something bad will happen to me. That’s when I reassure him that I am okay, anything that happens we will get through together and I really take the time to explain things to him because I do believe kids understand more than we give them credit for, but they might understand it a different way.
BM: At the very beginning, I had trotted out the word, ‘uncertainty.’ There was uncertainty that you went through en route to the procedure and what immediately followed, but even today, with only one kidney, to some degree, does uncertainty dog you?
AS: Absolutely. Even with my being in remission, you still have in the back of your head, wondering is it going to come back? Did they get everything? You’re just sitting there, waiting for your next scan. I am still on active surveillance, now once a year, I am grateful for that. But, I am not going to lie and say I have not thought about it and wondered what the next scan will bring. So, I think uncertainty will always be there. It may get less over time, but the longer that you stay healthy, the longer you are in remission, it gets better; but there are people who have been in remission for six years and it has recurred. There are people who have been in remission for 20 years and it has recurred. So, I think the way cancer is, that uncertainty will always be behind you, watching you, waiting for you.
BM: Annamarya, we are going to wrap things up and we always finish at the same place. We want to put you in the position of your having a face-to-face encounter with someone who has just been diagnosed with renal cancer. We suspect you would have a message for that person, and within that message, there might be one point that is more important than all others. If you had such an audience, what would that most important point be?
AS: It’s okay for you to feel the way you feel. I had mentioned earlier the idea of managing other people’s emotions and it is something that I talk a lot about. You almost feel guilty about having cancer because of the pain it is causing other people. That can result in your suppressing your own emotions and how you feel. There may be that logical part of you that says you are fine, that all they have to do is remove that kidney, but you are going to feel a certain way, emotionally. It’s okay and you do not have to suppress that, you do not have to make other people feel better. It’s okay that you feel that way because the fact is, cancer is cancer. It doesn’t matter what type of cancer it is, it is still something you will always have as a part of you. As my older sister said, “It is a club no one wants to be a part of and no one can ever leave.”
BM: Our guest has been Annamarya Scaccia of Austin, Texas. She has survived chromophobe renal cell carcinoma. Thanks for sharing your story, one with a lot of peaks and valleys and I certainly hope going forward, that is all just peaks and no valleys, if it could possibly be that way. Annamarya, thanks so much for your time, thanks for sharing your story with us.
AS: Thank you for having me, this has been great. I hope I can inspire others to just talk and be honest about how they feel and get that support that they need.
BM: Thank you so much, Annamarya, thanks again. That will conclude this episode of Cancer Interviews. Don’t forget, if you are on a cancer journey or know someone who is, you or they are not alone. There are people like Annamarya, and organizations like the Kidney Cancer Association there to help you, So, until next time, we will see you on down the road.
Additional Resources:
Support Group:
The Kidney Cancer Association: www.kidneycancer.org
KCCure: https://kccure.org
SHOW NOTES
TITLE: Annamarya Scaccia, Renal Cancer Survivor – Austin, Texas, USA
What began as lower back pain for Annamarya Scaccia became a diagnosis of chromophobe renal cell carcinoma. Annamarya has survived the removal of a kidney, and post-treatment has become a competitive bodybuilder, and serves as an advocate for others through the written and spoken word. This is her story.
Additional Resources:
The Kidney Cancer Research Alliance
The Kidney Cancer Association
Time Stamps:
02:36 Annamarya had severe back pain, which led to her diagnosis of chromophobe renal cell carcinoma.
04:00 Said she wasn’t shocked by the diagnosis.
05:22 She was tipped off about the possibility of her diagnosis because for years, her white blood cell count was high.
07:50 Said her urologist realized he would have to remove her entire left kidney.
09:15 Describes life with only one kidney.
13:36 Annamarya says for anyone on a cancer journey, it is important to connect with a support group.
16:24 Her gynecologist said at age 39 and with one kidney, Annamarya would not be able to carry a child.
21:50 Annamarya describes her five incision sites.
26:46 After her surgery, she switched from kickboxing to competitive bodybuilding.
KEYWORDS (tags):
polycystic ovary syndrome
cancer survival checklist
chromophobe renal cell carcinoma
cancer bootcamp 101
nephrectomy
bruce morton
dialysis
annamarya scaccia
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